Professor Cyndi Shannon Weickert and patient ambassador Richard Schweizer spoke to Lynne Malcolm for ABC’s All In The Mind radio show about her latest research findings and the hope it offers to those with schizophrenia.

* Professor Cyndi Shannon Weickert runs The Schizophrenia Research Laboratory, a joint initiative of the Schizophrenia Research Institute, University of New South Wales, Neuroscience Research Australia (NeuRA) and the Macquarie Group Foundation. It is supported by the NSW Ministry of Health.

Radio National’s All In The Mind recently devoted their program to the success story that is our Brain Training Centre, recently established at St Vincent’s Hospital in Sydney thanks to the work of Assoc Prof Melissa Green (pictured, above) and the financial support of the Rotary Club of Sydney.

Quote: “I think there’s a misconception out there that people with severe psychotic illnesses aren’t able to do much and it’s just really sad and untrue.” ~ Assoc Prof Melissa Green.

Click to listen here, or read the transcript below, courtesy of the All In The Mind program.

Lynne Malcolm: Welcome to All in the Mind on RN, I’m Lynne Malcolm. Does this situation sound familiar to you?

Pamela Marsh: A friend sees another friend, she’s put on a little bit of weight, and the friend says, ‘When is your baby due?’ And of course, not pregnant. Like I said, that happened to me a couple of times, whereas for somebody who is interpreting something literally it’s like, well, you look pregnant so that is the actual fact of the situation.

Lynne Malcolm: Dr Pamela Marsh, who understands all too well from her family experience that making a social faux pas every now and again is one thing, but to constantly misread social situations and facial expressions can profoundly affect your everyday life.

Alana Dobie: You know, if you could imagine that if you were hearing voices, your attention, your concentration will be impacted, like carrying on a conversation with somebody with headphones in. One of the premises of relationships in general is to really be there with another person, so if you are distracted it makes it really impossible for any one of us, if we are on our phones, we are preoccupied with a worry, or even just thinking about what we need to do next. So having an auditory hallucination can really impair our relationships in the present.

Also if one feels paranoid or persecuted as well, that’s likely to influence or flavour the way we interpret social situations. So I think this program is so useful because it gives them permission to talk about and access their emotions. And then also unpack how, for example, a racing heart might be different in anxiety to anger to restlessness. And these are the kinds of things that we need to know in social situations and that we all find really useful tools.

Lynne Malcolm: That’s Alana Dobie, Clinical Psychologist at the Prince of Wales Hospital. She’s been running groups using the social cognitive training programs developed by Dr Pamela Marsh. More from them later.

The realisation that brains are plastic and can physically change and grow, given the right conditions, is now widely accepted. It’s captured in the phrase ‘use it or lose it’. All in the Mind listeners will have heard our past discussions on brain training being used to improve our cognitive skills. Well, the value of this sort of training for people with debilitating symptoms of mental illness is now being explored with great promise. A new brain training centre has opened as part of the St Vincent’s Mental Health Program in Sydney. Melissa Green is Associate Professor in the School of Psychiatry at the University of New South Wales and she will runs the centre.

Melissa Green: What we know about people with psychotic illness, and that includes people with schizophrenia and bipolar disorder, is that they have lifelong cognitive deficits that impact their social functioning, their ability to hold down a job and maintain interpersonal relationships.

In the most recent survey, a national survey of people with psychosis, the number one problem that the people with psychosis are reporting is that they are lonely, they are socially isolated, and they are then feeling like their quality of life is just not up to scratch. So we do know, there has been research showing that cognitive deficits in attention and memory are affecting the ability to function both socially and in the workplace. So we really think that by providing rehabilitation of these skills we can impact the daily lives of people with psychosis.

Lynne Malcolm: The Brain Training Centre at St Vincent’s has drawn on international evidence to select the best programs available.

Melissa Green: The research has shown that the most effective treatment occurs if you do come in more than once a week. So the centre is open daily, and clients can come in as they wish and undertake for as long as they like training on these computer programs. The programs that we’ve got on offer are personalised in a way that if the case manager says this person really has issues with memory but their social cognition is fine, we would point them toward the memory modules. There are a number of those that they can do that increase in difficulty as the person improves. And so it really is a personalised, tailored type of intervention for each person, depending on which particular cognitive skills they need to improve and their motivation levels as well. It depends how often they’d like to come in, and if they come in more often they will definitely improve more.

So at this stage we have only just started but we are seeing a very good response, a lot of interest from clients, once they come in and have a go. It’s a bit foreign, a lot of them don’t use computers in their daily lives, and once they see how easy it is and that there are rewards, little features that say ‘Great, you’ve improved’, and that way they’re having fun and definitely showing that they are keen to come back.

Lynne Malcolm: So just give me an idea of what the programs are like.

Melissa Green: Okay, so if you had a difficulty in paying attention to relevant stimuli, you might start on the attention module which will ask you to perhaps select a certain object, keep your eye on this type of object, say a square out of a bunch of triangles, circles, et cetera. So they are very, very simple, but would work up to more complex methods of training attention to more detailed things.

Nikita Rhukhankin: I’m Nikita Rhukhankin and I’m 19.

Lynne Malcolm: Nikita Rhukhankin has experienced psychosis and is currently in recovery. He attends the brain training centre each time he comes in for his mental health appointments, and seems to really get a lot out of the games they offer.

Nikita Rhukhankin: Hawkeye’s probably the best, I’m probably the best at it, so I’ve got four stars there, five stars there, so it’s pretty much just sharpening your visual memory I guess. The birds show up and you’ve got to click which bird is two different colours. The screen will flash and then they will disappear, so you just select which one you think it is, and they come up again.

Lynne Malcolm: So this is your favourite, and this is increasing the speed of attention, is it?

Nikita Rhukhankin: Yes. It’s good for memory as well, like you’ve got to focus because they only show up for a certain amount of time on the screen, so you only get a few seconds to see which bird is the different colour to the other ones. And the goal is just to get the best score you can…when they show up it is handy, but…

Lynne Malcolm: So can you tell me a little bit about how you came to come here and what your background is?

Nikita Rhukhankin: I’ve had a pretty long life, and I’m only 19 but I’ve been through a lot for a 19-year-old. I’ve been on the wrong side of the law and I’ve had problems with social things, family problems. I’ve used too many drugs, to be honest, it just ruined everything in my life; I lost my family, I lost my friends, I saw people get hurt. And I gave up because I’d been hurt and I thought I’m either going to sit here and end up homeless living on the street, I’m going to do something with my life, come to the hospital and get the help from the mental health team. And this was just an extra program to help my memory and the speed of my brain and intelligence, ways of talking to people, reading people, because when you’ve had a life like me you lose everything you were raised up to be. Like, I had a really good family and I went down the wrong path and it ended up in chaos and drama. You know, I’m probably lucky to be alive, and this is really important for me because I want to get a proper job and I want to have a normal life.

Lynne Malcolm: Have you been taking medication as well?

Nikita Rhukhankin: Yes, I’m on lithium twice a day, 450 milligrams twice a day, and that’s just to stabilise my mood. So I was on an antipsychotic a while ago, Seroquel, but that stopped. I’ve still got a lot of work and a long way to go, but if it wasn’t for this service I wouldn’t have got this far. This program has already helped me reconnect with my mum.

Lynne Malcolm: How?

Nikita Rhukhankin: Apart from the medication and putting the effort in that I have to maintain a positive attitude away from drama…for instance, on this program, people skills, it’s important to know how to talk to people and understand what they are saying to you properly. Sometimes Mum could say something to me two years ago and I’d blow it out of proportion and it can turn into an absolute awful family fight. And by doing this it has helped me gain knowledge of how I read her face and her actions and the words she says and what they mean, not just jumping to conclusions, like it’s focusing on things that are really important. In my day a lot of things go through my head, and being able to select out what is really important to focus on, the brain speed is handy for that, the intelligence is handy for that. This is like a guide.

Lynne Malcolm: While Nikita’s favourite type of game is the one that improves memory and attention, it’s the games that improve social cognition that have made a real difference to the way he’s relating to people.

Dr Pamela Marsh from Macquarie University developed the program at the brain training centre that focuses on social cognition. Her motivation grew from her personal experience of being the carer of her mentally ill son, Damien. While Damien didn’t want to speak on the program today, he gave his mother permission to tell his story.

Pamela Marsh: When he had the actual psychotic episodes we weren’t aware of them, so it was only with him talking to his psychiatrist that that came out. He was seeing things like ghosts coming out of the wall, levitating off his bed and things like that. And I was sick at the time, my husband was caring for me, so we were struggling with the more I guess overt and explicit behaviours that he was displaying in terms of the attention problems and not being able to stay in school, not being able to maintain a job. Although he went on and did very well at TAFE with mechanics, he still couldn’t maintain a job because he’d get into trouble. So that was very, very difficult to watch.

And now he lives at home with us in a granny flat because he can’t live independently. And honestly the most difficult aspect of his behaviour are the negative symptoms, the fact that he has no friends, that he lives in isolation. He works as a bricklayer now, he went on and did bricklaying with his dad, and we really struggle watching that isolation. And every now and again something will happen that…acutely, in terms of behaviour, that we have to deal with. I don’t want to go into a lot of details because some of it has ended up in a legal situation et cetera and I don’t want to talk about that publicly. But it can be very, very difficult to help him through that and know the best ways forward.

And to watch your child not have a partner (because he’s 33), not go out and socialise like you might exact a young man of that age to do, and we’re his support network…not that I ever mind being his support network, but for my husband he’s been carer for both of us on and off because we’ve both had illnesses. So yes, very difficult.

Lynne Malcolm: At the same time as caring for her son Damien, Pamela Marsh has herself lived with mental illness. She was diagnosed with depression, then borderline personality disorder, and finally chronic post-traumatic stress as a result of experiences earlier in her life. Over recent years she’s also juggled a PhD focusing on the social cognitive difficulties she’s observed in her son, particularly the way he reads emotions in others.

Pamela Marsh: In terms of reading faces, even though I didn’t have the training at the time I found myself when he was really little actually saying to him, ‘Damien, look at my face, I’m joking, I’m smiling, see, this is a smile.’ So I found myself on an implicit level explaining things like that to him. And I fell into my PhD in this particular area. But as a child growing up he didn’t get on with other people very well. He was aggressive quite often, and now, like I say, his social isolation, he is not understanding what other people mean when they say things, or thinking that another person is out to deliberately do something to him. So, for instance, if somebody were to stop abruptly in traffic in front of him, you or I might go…and that’s it, whereas for Damien maybe he will think that that person has deliberately tried to do something to him.

We find ourselves, both my husband and I, oftentimes trying to explain another person’s perspective. You know, maybe they weren’t angry, maybe they weren’t even upset with you, maybe something bad happened somewhere else in their day, sort of just everyday social interactions. So I’ll use an example: our neighbours have a little dog and it does bark a lot, and Damien was getting upset with that. He had a dog and that’s his companion dog, AJ, and he loves her to death, but he wasn’t able to infer that the neighbours also love their dog as much. And so it sort of came to a head one day, and the neighbours were lovely enough to come over and talk to my husband and I.

So then Damien, after we talked to him and explained the neighbours’ perspective—that they love their dog too and they do understand that he barks and they try to stop him—we had to go over…well, we didn’t have to, but we went over, Damien and I, to talk to them. And he took them chocolates and also a gift certificate from…I think it was Pet Barn, that he had. But then when we got over there and he apologised, and he did a really good job, but then he actually took this lady in his arms and gave her the biggest hug and she looked a little alarmed because he’s a big boy. When we were coming back he asked me, ‘Mum, was that okay?’ And that’s the sort of interaction level that we have to explain to him at. I told him that was okay, even though he didn’t know the lady.

Lynne Malcolm: You’re with All in the Mind on RN, Radio Australia and online. I’m Lynne Malcolm, and we’re looking at some ways to help people experiencing social and cognitive difficulties as a result of mental illness.

Pamela Marsh has developed a program called So Cog and it’s being used in a brain training program at St Vincent’s Hospital in Sydney. The program is one of only three she knows of internationally, the other two were developed in the United States.

Pamela Marsh: So Cog is basically a socially interactive training program. It’s games and activities based, and one of the activities that we use is we’ve been lucky enough that Australian TropFest film festival have allowed us to use their short films, which are excellent for this purpose because they are often using humour that is quite ambiguous and just humour indeed, because people with schizophrenia often have difficulty understanding humour when it involves making an inference about what we call a false belief.

Lynne Malcolm: Pamela Marsh showed me a couple of the different types of games in So Cog. Some are not computer based, like this one:

Pamela Marsh: Okay, so what we have in front of us here is one of our board games, which is So Cog Social Trivia. You have a multiple choice answer. You throw the dice and you move around the board, and whatever square you land on is whatever type of story you get. So you’ll see that you get faux pas stories, we call them ‘oops moments’, so basically who said something awkward or something they shouldn’t have said in a social situation.

We have language-based stories because often what happens with schizophrenia, the sorts of difficulties are with non-literal speech, so if somebody uses sarcasm or irony or a figure of speech, it can be very difficult sometimes for people with schizophrenia to understand what that means because they will interpret that literally. So we have stories based around that.

Deception can also be difficult to understand. So we try to talk about the difference between what are white lies, what are great big whoppers. So for instance you might tell a white lie when you want to save somebody’s feelings about something, maybe that’s okay. But then there are great big lies, so maybe not so okay and sometimes to save ourselves in a situation.

And then there is of course a false belief, so understanding that somebody else might not be privy to all the facts in a social situation that we are.

Lynne Malcolm: So what you are doing is moving around this board with a dice?

Pamela Marsh: Yes. So if I landed on a deception story, the square with a D, the person running the game would pull out a card, it’s going to have a deception type story on it, so the one that always comes to mind for me, because this happened to me several times at the hospital where I was working, a friend sees another friend, she’s put on a little bit of weight, and the friend says, ‘When is your baby due?’ And of course, not pregnant. Like I said, that happened to me a couple of times, whereas for somebody who is interpreting something literally it’s like, well, you look pregnant so that is the actual fact of the situation.

So what we do is…following the story, so, did somebody say something awkward or potentially embarrassing, and there’s a multiple-choice, A,B,C. And so you make your way around the board. Whoever ends up at the end with the most points wins, whoever has got the most points at the end of the week receives a little prize out of a prize basket.

So now we’re looking at a computer game for the emotion recognition training program of So Cog. This is called Fix My Face. So what you see here on the screen is a photo of a facial expression. The eyes in this particular example are blanked out of the facial expression, and the idea of the game is, as the thought bubble says, ‘Will you help me find my eyes?’ So the idea of this game is for the player to match up the eyes for this facial expression.

Lynne Malcolm: So this face, her mouth is slightly open, and then you’ve got a range of different eyes to go with it.

Pamela Marsh: Yes, that’s right. So if you can see down here. I think this is the correct one, so I’ll go…

Lynne Malcolm: I think I would have chosen that one too, the eyes are quite wide open.

Pamela Marsh: And you’ll see here on the screen it comes up and says, ‘Great job, you scored five points’, because I had it correct. And, next challenge, we press on ‘next challenge’…

Lynne Malcolm: So what we would have seen there was surprise I guess, is it?

Pamela Marsh: Yes, so for a bonus point you have to name the expression. I’ll get it wrong the first time…so fear is commonly confused with surprise. If I click that, we are actually both wrong because it was fear!

Lynne Malcolm: That’s right, I’m feeling fear…oh…

Pamela Marsh: I should be able to explain the differences there, but…yes, if you look here around the eye area, when you look surprised the eyes aren’t as staring as they are here in fear, so if you look at…this is Anna, Anna’s eyes are very starey there and they are quite intense, and if you see around her eyebrows there, even though her eyebrows are naturally curved a little, when you are fearful the eyebrows are more tense and straight. So this is a really good demonstration of how facilitators and developers and clinicians get it wrong too, and that’s what happens in groups, and that’s a really good learning process too.

Lynne Malcolm: It’s still early days to assess this type of program, but one of the studies Pamela Marsh has done shows that even after one month of remediating facial expression recognition with a simple computerised tool, improvements have been observed. And there is some quite uplifting anecdotal evidence.

19-year-old Nikita Rhukhankin has been attending the brain training centre at St Vincent’s Hospital for several weeks now, and he’s noticing some changes in himself which are making things a bit easier.

Nikita Rhukhankin: It’s been a lot easier for me to read faces and people’s expressions. I can take things as a joke and I can take things seriously, but I’ve been able to read things better than I used to. I could just jump to a conclusion, thinking that was what that person meant, but by doing this it helps you understand, because you need to be able to understand that sometimes it’s not always against you, I mean, the whole world’s not against you. But if you actually put in the effort in a program like this, you know, use your own knowledge and what you’ve got…you know, I dropped out of school in 2009, but I’ve still managed to get here and get scores that I never thought I would.

Lynne Malcolm: And you were saying that it’s helped you with your relationship with your mother. What sort of feedback has she given you about whether you’ve changed or how you might be different?

Nikita Rhukhankin: By me putting in this effort to this program Mum has seen that it’s not just me talking, it is me doing things and she can see results. It might only be small but it is very important and crucial to my life. I don’t want to be nothing when I’m 30, and this will help me get to be a CEO and follow in her footsteps or get that life, and she can see that, she’s told me. She is said, ‘You’re different,’ it is not just the help I have received from the medication and the staff, because this is another thing for me to focus on and a positive thing for me to put knowledge into. Eventually I can come back and say, well, I did this and I did that, look at me now. That’s a goal.

Melissa Green: I think there’s a misconception out there that people with severe psychotic illnesses aren’t able to do much and it’s just really sad and untrue. If given the right personalised care, these people are the most creative of all of us, and the particular skills are remediated that can help them be creative and function in the real world, these people are valuable to our society and it has been such a shame that that hasn’t been picked up on and really fostered in our rehabilitation and care.

Lynne Malcolm: There does seem to be a bit of a shift in terms of how we are seeing recovery. Can you talk a little bit about that new perception of recovery?

Melissa Green: Yes, I think that’s really an exciting change and a much needed change. These diseases or illnesses, whatever you like to call them, have been seen obviously as brain diseases that respond to medication, that was actually always found as a serendipitous discovery, that this medication works, and so, okay, then let’s use it. What we’ve noticed over the past 30 to 40 years of psychotropic medications is that yes, they reduce the overt symptoms, the types of behaviours that you and I would overtly see in the environment and think that person is weird, that person is suffering from something. So they almost dull the person into a mundane states that then they are not noticed in society. So we’ve gotten rid of those overt psychotic symptoms.

But what has remained are these severe and disabling cognitive deficits that the medications do not touch. There has been a lot of effort by the pharmaceutical companies over the past 10 or so years to try to develop drugs that impact the cognitive disabilities, and at this stage nothing is working. And that is one of the main reasons why it is being increasingly acknowledge that these psychosocial interventions are necessary as adjunct treatments. They are improving cognition in a way that the medication just cannot do.

We also would never try to say that these cognitive remediation techniques should be used alone. For some patients they have to be. I’ve met one patient in particular in the past who was allergic to medication, and thankfully he had a wife who really got her head around the current literature and helped him with cognitive styles of treatment, and he has been okay. But the majority of patients do need some form of medication and this understanding now and acknowledgement that both cognitive remediation at a basic level, more complex social cognitive rehabilitation, and also these vocational placement support programs that are going on that are really helping, as I say, in having a patient decide ‘I’d really like a job’ in whatever it is that they decide, and then having an individual person support them in a way that gets them there. It usually involves liaison with teams like us who can provide some cognitive rehab, some cognitive behaviour therapy, which is a different thing altogether. But yes, it is definitely an increasing acknowledgement that medication alone is not going to solve these people’s long-term problems.

Lynne Malcolm: Dr Melissa Green acknowledges that these remediation programs don’t solve all patients’ problems. For some people their impairment is so severe that it wouldn’t work, however from what she’s seen so far, she’s quite inspired by the potential of this approach.

Melissa Green: When we got the first bits of feedback from clients we were training and when we saw the results of our work I was absolutely thrilled that we’ve come across something that is so simple when you think about it. We know that if we practice we get better. We are teaching the brain how to do things again that have been impaired by the illness by simply repeating and training and making neurons fire together and then they will wire together. So I think in the long term this kind of remediation, I would love to see it rolled out as standard care in all hospital settings. It’s something that I think can’t be ignored now as an adjunct treatment that’s beneficial.

Lynne Malcolm: And Pamela Marsh has had some great feedback from carers.

Pamela Marsh: One of the mums came up to me and she actually said, ‘My son did your program.’ And she told me that stage that he had hugged her I think it was for the first time ever since being ill, and her feedback at this meeting was, ‘It changed my relationship with him because he now comes home from work and he tries to tell me about his day. I might not always follow it, but he’s trying, and he tries to make facial expressions.’ You know, that was about probably the most awesome moment and reinforcing for me why I’m doing this research.

Lynne Malcolm: Dr Pamela Marsh from Macquarie University.

Whilst her son Damien hasn’t participated in her training programs, because it’s his mum that runs them, he has agreed to help her research and test the online version of So Cog.

Thanks to Nikita Rhukhankin for sharing his story with us today.

Go to the All in the Mind website for more information, and you may like to revisit the past episode of All in the Mind on brain training, and watch an All in the Mind video on RNTV on this topic as well. I’ll put links to these other offerings on our story page, go to abc.net.au/radionational. While you’re there leave a comment and join us on Facebook too.

Watch as Professor Cyndi Shannon Weickert shares the very personal story of what drives her in her search to discover the causes and a cure for schizophrenia.

Afterwards she sat down with Fenella Kernebone to talk about her greatest lesson worth sharing.

* Professor Cyndi Shannon Weickert runs The Schizophrenia Research Laboratory, a joint initiative of the Schizophrenia Research Institute, University of New South Wales, Neuroscience Research Australia (NeuRA) and the Macquarie Group Foundation. It is supported by the NSW Ministry of Health.